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Found 114 results

  1. Hello I'm a 24 year old female from germany. I try to make it as short as possible, thanks for reading . I've always was a sick child but the first time I really realized I was getting more sick and sick every day was around age 11. By now I pretty much had every symptome related to pans/pandas. I had my first tic at age 3. I would start stretching my limbs into every possible direction and stare into nothingness for hours, I also had sudden movements. I can't remember but my mum can. It went away by itself. By age 6 I started to have severe anxiety. From that time on I was scared of everything, I wouldn't go anywhere without my mum. In school I was so scared I started sweating as if I was taking a shower. By age 11 I started having severe sinus problems and I would get sick every 6 weeks, but I never had fever. I would get aggressive easily and was extremely moody, I also had severe gut problems Age 14: I started to faint randomly - in the bus, at school, In the subway, night sweats started, every night for 2 years. I had problems with my handwriting, it was becoming so bad my teacher couldn't read it. Age 16: I woke up one saturday and was dizzy and this is where the worst part started. I stayed dizzy for 2 years. I had severe migraines, it felt as if my head was exploding, my coordination was gone, I had extrem light sensitivity too. At 18 it went down to extrem pain in the neck and confusion.Because no doctor diagnosed me except with allergies to milk, egg etc. I started a raw food diet and went back to school to get my a level. At 20 I had a half year of no symptoms I finished my a-level and then suddenly the gut started again, I couldn't eat anything (2016), I had constant constipation or diarrhea I lost 7 kg and was so intoxicated I smelled from every pore when I entered a room, I had to get infusions from a doctor to get the poison out of me. 1 year later I started having auditory hallucinations (now for 2 years) . Also 4 months ago the tics started again. Since 2016 the sinus problems are back, I have nerve pain, my knee joints hurt after taking a shower, sometimes my skin burns and a lot of other symptoms. I will now start getting tested for infections. We start with lyme disease because I remember having a tick at 14, 2 months before I fainted for the first time. I have absolutely no clue what else I have to test for. It's also really hard to find a doctor that knows about pandas in Germany. So basically what I'm asking for is what should I get tested. I read a lot about co-infections, Lyme tests that aren't accurate, encephalitis, something about MTHFR gene and pandas but I don't know what to look for. I'm really confused and my mum (who loves me but...) is really bad at research doesn't know what to do. Until now we tested : -I had a spinal tab (they tested for encephalitis) - negative -MRI-negative -I had an autoimmune blood test - myelin antibodies positive + -They tried neuroleptics - didn't work, then they said they don't think I have schizophrenia -I had an eeg - they found slow waves and put me on keppra against seizures that I didn't have back then. + -I had a gastroscopy and colonoscopy - negative. I'm still waiting for the blood work they tested for gluten sensitivity. -2016 I went to a naturopath he tested me and told me my body couldn't process meat protein anymore. Also he diagnosed me with an illness not accepted by mainstream medicine called pyroluria. But he managed to get my stomach back to working, sometimes it was rock hard even after just eating a cucumber. He also said I don't have leaky gut (also not mainstream medicine) + I'm no expert I don't know where to start because my mum and me realized that doing the standart tests won't work. I'm reaching out for those mums that got their children tested and did their own research. Please help me to figure this out because my mum doesn't even know what a forum/board is and I'm at my limit and really scared. Also sorry for my bad english. Thank you very much. I would be so grateful if you could help. Zanzarah.
  2. I have past positive test results for Lyme, Bartonella, Babesia, Relapsing Fever (B. Hermsii), Rickettsia. I spent the past year treating these infections with antibiotics and herbals and two IVIGs. I have never had any physical symptoms of the above whatsoever, in fact I have managed to stay very fit and workout 5 days per week throughout most of my treatment. All my symptoms are psychiatric PANDAS/PANS-like (24/7 extreme social anxiety, depression, obsessive thoughts/worries). Whenever I have treated any of my Lyme, co-infections and candida, I get a significant increase in my PANS symptoms along with some fatigue (never physical pain). I also don't really feel I ever improve with detoxing (epsom bath, alka seltzer gold, detox supplements, etc.). I have alway been under the impression that this is a herx, but I came across this article and thought it would be relevant to share: http://lymemd.blogspot.com/2017/08/autoimmune-encephalitis-and-lyme.html Based on this, "herxing" that lasts weeks on weeks and months on months and doesn't improve or change isn't actually herxing. It is continual triggering of the autoimmune response which is not helpful or beneficial at all. I was always under the impression that my feeling worse with increased PANS symptoms was the Lyme/co-infections dying off. Now I am thinking that all of that "herxing" may not have been necessary. Chances are, even though I have/had these infections present (and as we know you should treat infections BEFORE immune therapy/IVIG/PEX), my immune system was strong enough to hold them at bay and my only issue was the PANS autoimmune component. I hope this may be helpful for other people who have been in the same predicament as I was and if anyone has any insight on this I'd much appreciate it. Is my thought process above correct? Having just finished 7 sessions of plasma exchange, I am about to embark on 6 months of monthly IVIG and my plan is to avoid stirring the pot and re-triggering any autoimmune response while my body adapts to the IVIGs. For me, this is looking like using Buhner's more gentle approach to keep any remaining Lyme/co-infections in check without triggering my immune system into reacting and exacerbating my PANS symptoms. It has been a miserable road for me, especially in my early 20s when the rest of my friends have moved on and finished college and started their lives. I have yet to see any improvement and it has been 3 weeks since PEX. Only way to go is forward.
  3. Hi All, It's been a few years since I've posted. DS11, who had a mycoplasma infection and many of the issues associated with it, has come out on the other side. He's just started middle school and is doing very well! Unfortunately, DS8 has just been diagnosed with Lyme. Our pediatrician prescribed 500mg of amoxicillin, 3 times daily. We just visited an infectious diseases pediatrician this afternoon. I presented him with two questions: Should we test for co-infections? Should we be using an intracellular antibiotic? I was surprised that he answered "no" to both questions. He simply said the co-infection Babesia would have resulted in a terrible fever and headache and that would have been the end of it. As for an intracellular antibiotic, he looked at me quizzically and said, "Lyme is easy to kill.... You've been reading the wrong stuff." I may be a bit rusty, but I still believe next steps should involve finding an LLMD and addressing the two above issues. Any guidance / suggestions will be greatly appreciated. Thanks!
  4. Hello. We have 6 children with lyme and co-infections. 3 have PANS. I am seeking advice for our 16 yo ds. We think his PANS symptoms began around age 3 1/2 yo (positive bull's eye rash at 2 1/2 yo w/only an 8 day course of antibiotics.) His prrimary symptoms until his teens were OCD and learning issues. He was never formally diagnosed; we've put it all together within the last year after his sister had successfull treatment for an eating disorder with IV antibiotics. Fast forward to now, he has major rages and still can't learn. Super high anxiety and OCD in the need to control everything in his life. He does not have relationships with anyone outside of our house and his siblings do not enjoy being around him as he is very abrasive. After one year of antibiotics, physical symptoms have improved with no shift in psychiatric symptoms. Our doctor has recommended brain mapping/neuro feedback and we are going to pursue that. In the meantime, I would like to figure out how we can start the process to be approved for plasmapheresis, realizing that this is a long shot. Does anyone have any advice? We are in Colorado and if anyone knows of a clinic or doctor that we consult with, that would be appreciated, too. Also...the Cunningham panel. Has anyone had a positive after 10+ years of illness? And, is it possible to get our son back after so much time spent in this illness? Amy
  5. Has anyone who belongs to UHC gotten approval for IVIg for 2018? We have tried several codes all of which have been denied and appealed. If so, would love to know codes used.
  6. our DD has been prescribed as part of her protocol either Trileptal or Lamictal - does anyone have experience good or bad? she has been diagnosed with Lyme . Our concerns are the side effects of those two. They are supposed to help with her nuero-irratabliity, nerve pain and extreme sound sensitivity because of the infection. We are considering using something like Lyrica - appreciate any feedback
  7. Hello all you amazing, fighting Moms and Dads, Was looking for a holistic doc in the NY/CT area who treats Lyme/Pans and made an appointment with him. The other 2 integrative docs were much more expensive so I'm a bit worried that he isn't as good. Hopefully it's just capitalism trying to trick me :-) If anyone has or knows of this doc any info would be greatly appreciated. The other two crazy expensive docs that I'll take her to if need be are Kenneth Bock in Red Hook, NY and Elena Frid in NYC. TIA and best wishes to all!
  8. has anyone been treated by Dr. J @ his clinic, going to start my DD on treatment. pls inbox me with comments..thanks much
  9. Lông mày dựng ngược là có thai? Đây là quan niệm dân gian được lưu truyền từ xưa cho đến ngày hôm nay. Nếu như bạn hỏi qua bậc trưởng bối, chắc chắn đa số mọi người điều nghe qua hiện tượng này. Vậy đây là sự thật hay chỉ là những tin đồn thổi? Liệu rằng chị em phụ nữ khi xuất hiện lông mày dựng ngược là thật sự có thai? Cơ sở nào có thể chứng minh được điều này? Hãy cùng chúng tôi đi tìm câu trả lời qua các thông tin được cập nhật bên dưới, bạn nhé! Lông mày dựng ngược là có thai? Ngày xưa ấy, khi mà nền y tế chưa phát triển rầm rộ như hôm nay, ông bà ta thường theo dõi sự thay đổi trên người để nhận biết tình trạng sức khỏe cũng như việc có mang bầu hay không. Ngoài trừ để ý "ngày đèn đỏ" đến muộn, họ còn quan sát được khi lông mày có dấu hiện dựng ngược, thậm chí là tóc mai, tóc gáy cũng dựng lên thì chắc chắn người phụ nữ đã mang bầu. Tỷ lệ chính xác có thể lên đến 99%. Đây là quan niệm cũ xưa hầu như ba mẹ nào cũng biết, hoặc ít nhất họ đã từng nghe qua một lần. Xem thêm: phun thêu lông mày ngọc dung Hiện nay có khá nhiều phương pháp xác minh bạn có thực sự có thai hay không. Nếu như muốn đảm bảo tính chính xác, tốt nhất là nên mua que thử thai để xem có hai vạch hay không? Hay bạn cũng có thể đến bệnh viện phụ sản thăm khám để biết được tình trạng sức khỏe của mẹ và bé. Thay vì phân vân chuyện lông mày dựng ngược có thai là thật hay giả thì tốt nhất là nên áp dụng một trong những giải pháp hiện đại ở trên. Cơ sở nào chứng minh lông mày dựng ngược là có thai? Câu chuyện lông mày mà dựng ngược thì có thai được truyền lưu rộng rãi trong dân gian hơn trăm năm. Chỉ bấy nhiêu thôi cũng đủ chứng minh xác suất sự thật là rất cao. Nếu như một ngày đẹp trời nào đó bạn chợt phát hiện lông mày có hiện tượng dựng ngược trên gương mặt, kèm theo một số thay đổi sinh lý như đi tiểu nhiều lần và liên tục trong một ngày, cảm giác buồn ngủ, chóng mặt, dễ nôn mửa khi nghe thấy mùi tanh, mùi lạ thì bạn nên dùng mua que thử thai. Biết đâu bạn mang thai thật thì sao? Phải biết rằng thời gian đầu mang thai rất nguy hiểm, dễ sinh non nên bậc cha mẹ cần phải cẩn thận hơn. Xem thêm: Khám phá địa chỉ phun thêu chân mày đẹp nấc tiếng cả nước Một số trường hợp lông mày dựng ngược chưa hẳn là có thai. Chẳng hạn như một số bạn gái từ khi sinh ra bẩm sinh chân mày đã dựng ngược sang một bên. Tất nhiên, trường hợp này rất hiếm, tỉ lệ chị em có đôi lông mày như thế này không nhiều. Nói tóm lại, chân mày dựng ngược là mang thai thuộc về quan niệm dân gian. Hiện nay vẫn chưa có cơ sở khoa học nào có thể chứng minh được. Vậy nên, lời khuyên chân thành dành cho bạn là khi phát hiện lông mày dựng ngược là nên đi khám thử để đảm bảo việc mình mang thai có thật hay không. Chia sẻ câu chuyện vui về lông mày dựng ngược. Hồng Ngọc, dân Đà Nẵng tâm sự: "Kết hôn hơn 3 năm mà chưa có mụn con nào, mình và chồng lo lắng lắm. Cả hai đi khám nhưng không phát hiện bệnh gì. Mẹ chồng mình thì hối thúc mãi, suốt ngày cho mình và chồng uống thuốc bổ. Thời gian dài, đâm ra cả hai cảm thấy áp lực, đôi lúc còn xảy ra tranh cãi. Chồng mình quyết định cả hai dọn ở riêng một thời gian để giảm bớt áp lực từ phía mẹ chồng. Hơn nửa năm sau đó, có một ngày mình phát hiện lông mày dựng ngược cả lên. Không chỉ vậy, tóc mai, tóc gáy cũng dựng ngược, nhìn quái lạ vô cùng. Mình sợ bản thân bị bệnh lạ nên dấu chồng đi khám thử. Bác sĩ khám qua và hỏi mình một số hiện tượng sau đó bảo mình qua khoa phụ sản xem sao. Mình lo lắm, nghĩ bản thân chắc bệnh nặng lắm cơ, lúc đó chồng mình lại gọi điện thoại. Tâm trạng lúc ấy vừa buồn vừa tủi thân, thế là ôm điện thoại khóc hu hu. Chồng mình hoảng sợ, chạy ngay đến bệnh viện, cả hai đi và khoa phụ sản khám thì phát hiện mình mang thai 2 tháng. Hai vợ chồng vừa mừng vừa sợ, còn mình cảm thấy mất mặt vô cùng. Vụ lông mày dựng ngược báo hiệu mang thai gì đó, từ trước đến giờ mình chưa nghe nói qua nên không biết, ai ngờ lại xảy ra trường hợp dở khóc dở cười này. Nguồn: https://github.com/thaiphong92/phunxam/wiki/Địa-chỉ-phun-thêu-lông-mày-ở-đâu-đẹp-nhất-cả-nước
  10. Hello all. My daughter is 17 and has been on every pysch med imaginable, CBT/ERP, you name it...I've discovered over the past few years her OCD is caused from infection in her brain and right now I am searching for a pyschiatrists or MD.. any DR really, who will be willing to consider using ceftriaxone to help treat her. She is miserable right now and OCD is preventing her from getting her physical conditions treated properly. Studies on OCD and ceftriaxone are remarkable and every time she has had some she has had significant symptom relief, only issue is finding a doctor who will listen. Any response appreciated. You can personal message me on here or email as I've heard you can't post names of doctors in forums.
  11. Hello, all. I posted in this form about eight or so months ago searching for answers on how to treat my daughter's pandas. Since then, after a very long and hard journey, we have found out she has Neurolyme and multiple coinfections. It seems she regressing neurologically on a daily basis and the oral antibiotics aren't doing anything for her. She responded excellently to ceftriaxone in the past, so I am in desperate search for an LLMD willing to give it to her again. We have been seeing an LLMD for a few months now, but I found him to be dismissive and not willing to hear anything out. My daughter is about to turn 18 and half of her time is spent doing compulsions, the other half she is spacing out, sometimes so bad she can't remember her own name. She is not going to be able to tolerate oral abx until her head is cleared up a little and pyschotropic medicines have an extremely negative effect on her. I am willing to travel overseas if it means getting her the proper Lyme treatment, I just need some recommendations please. I'm aware forms don't allow LLMDs information to be posted, so if anyone could email or personal message me some it would mean a great deal. Please. I am desperate
  12. Hello - have you all heard of and considered Low Dose Immunotherapy (LDI) for your children. There is a very nice YouTube video of Dr Ty explaining the use of LDI for lyme/pandas. He is a very convincing speaker and we are going to talk to him. Wanted to know if you have any feedback for us.
  13. Question - how long does it take to recover from PANS/PANDAS? I know every case is different, but just try to gauge where my dd is in her recovery . She just started 2nd month of treatment(abx &herbs) -headaches & light sensitivity have gone but still has hearing sensitivity & cognitive issues. We believe it was 7 months from her exposure to the time we started treatment....
  14. dd - officially diagnosed with PANS ( combo of lyme exposure, & strep) current daily regime - zithrox 250mg, minocyline 100mg, 1000mg D3, magnesium , NAC (1200mg) , probiotic, herbals - she has extreme sound sensitivity - looking for some good treatments (homeopathic & others) to give her some relief, any suggestions??
  15. my 14 yr old dd - officially diagnosed with PANS ( combo of lyme exposure, & strep) we are in week 3 of treatment (we along with our provider suspected is was PANS)- daily regime - zithrox 250mg, minocyline 100mg, 1000mg D3, probiotic, herbals - TBB plus & OPC Our provider doesn't believe in steroids, so we are this course for now. We are new to the PANS/PANDAS ( 3 months to get to this diagnosis) - we've heard about other treatment options - just wanted to get others opinions thanks
  16. My son (11 w/sever autism) has been treated for PANs for two years with antibiotics by an immunologist at MGH. Recently his symptoms worsened with increased anxiety, ocd, aggression, and a new tic disorder. Can anyone recommend doctors in New England who could treat a child like my son? We're feeling quite desperate. Thanks!
  17. DD6 had a major meltdown in school today that landed her with an in school suspension and the response to the stimulus was way out of proportion. This is on DAY 3 of 1st Grade!!! ...With LOTS of supports in place... I'm thinking that we may have to home school or hospital school or something. She's dealing with Lyme and Bartonella which I suspect was congenital but Idk. We've been treating Lyme since mid-January and she herxed horribly. Any thoughts? Any advice?
  18. Hi everyone, Have any of you had a dramatic regression/increase in symptoms from starting Rifampin? To give context, I’m 22 and had untreated PANS for eight years. I got diagnosed at 19 in 2014, had two IVIG’s, a tonsillectomy, a year of steroids, and I went into complete remission by the end of 2015. I got Lyme in 2016 and relapsed, and I’ve since had another IVIG and have been treating Lyme and co-infections with an LLMD. I didn’t start Lyme treatment until December—nine months after the initial infection. I also tested positive for Babesia and Relapsing Fever. I was doing really well this summer and was definitely getting much better, but in the last few weeks, I’ve gone downhill fast. When I started Rifampin two weeks ago (in a MWF pulse dosing), it dramatically accelerated my decline. I still have an occasional, pretty-good day, but most of the time, I’m so depressed I can barely take care of myself. My word-finding issues have returned, and I speak nonsense frequently. The atonic seizures (one of my most severe PANS symptoms since 2014) have come back, too. I feel confused and disoriented often, with periods of time when I feel dissociated and really far away from everything around me. I’m having all of the symptoms that I get when all breaks loose with a full-blown PANS exacerbation/relapse. Yet my parents claim I don’t have the same “look” as when I’m really at rock bottom. My LLMD thinks I’m herxing, but my psychiatrist thinks it sounds more like PANS (purely autoimmune) and that Rifampin is making my psych drugs (Wellbutrin, Lamictal, and Seroquel) less effective. My LLMD did warn that this new Lyme protocol could make my mood symptoms worse, but why so many other symptoms? So far, my other herxes have never lasted as long as this, so I’m afraid this is an autoimmune thing again. I'm detoxing with Burbur and Alka-Seltzer Gold, but any reduction in symptoms never lasts long. Has anyone else had a similar experience with Lyme treatment, and especially Rifampin? If so, what do you do to make this better? I’m so tempted to do a Prednisone burst, because that’s almost always made PANS symptoms go away, but I know that’s a bad idea with an active infection. But how am I supposed to keep living like this?
  19. I am hoping to get some help making sense of our current flare. My son got PANS when he was three, but he really fell off a cliff two summers ago at age 7. It wasn't until last summer that we began treating it as PANS with Dr. P, and by October had determined mycoplasma and HHV-6 as triggers. Two steroid tapers and 6 months on azithromycin and his infection numbers were down to nothing and he was doing well (making new friends, laughing, his personality back). However, his IgG numbers, which were very low in October, continued to drop. We planned on doing IVIG this summer. In early June he had a tick bite with a bulls-eye rash and began treatment that day for Lyme. Unfortunately, he has been declining as the summer has gone on. He did two weeks on doxy, a week and a half off before we realized he was still being affected then two weeks on Ceftin. Last week he became very aggressive which had not happened since two years ago so we started a prednisolone taper. We were also just denied IVIG coverage by our insurance and are planning on paying for it ourselves. He just switched from Ceftin to Rifampin three days ago in case he has bartonella. On top of all that, he was stung four times by wasps last week (can that cause flaring?) which has restarted a major bee/hornet phobia and has him scared of being outside. He also just started saying he hates the feel of water which takes away our only activity this summer of swimming. He is scared of everything, says he "doesn't feel right" and has started saying he wants to "go home" which in the past has meant heaven. His sister also has an open sore on her bottom which could be staph (we are having it looked at today). Can this be causing the flare? I am a wreck trying to trouble shoot and keep my own mental health strong. I am anxious to do IVIG as soon as possible to alleviate his suffering and give him time at home before school starts, but I wonder if we have all the possible infections covered. Any thoughts? I would also love advice about preparing for IVIG. Did it help? How did you keep your child calm? Do they need other medications at the same time to make it more effective? Any questions I should be asking of his doctor? Thank you for your advice!
  20. Someone on the site referred me to a Dr. Carolyn Walsh in Leesburg. I see she is on the Lyme board of loudoun county. Has anyone had experience with Lyme? If so what are her modalities ? Antibiotics, herbals,HBot, ? Not sure I can get in? Desperate! He is just laying there say after day till we can get an appt saying he doesn't feel good, if anyone knows of other Dr in va, Md. D.C. Besides Jemsek, Fletcher, Fishman, Mozayeni, please let me know thx!
  21. My son has been sick for 15 months bedridden with all the usual symptoms of mold/Lyme. He was treated for mold and most of his symptoms went away with the exception of headaches, fatigue, neurological symptoms like not wanting anyone to see him and isolating himself in phis room. I discovered purple streaks on left side of body. He has had low testosterone and cortisol , not sure if it was from mold or Lyme. Went to infectious disease Dr. sand he said purple streaks are STRETCH marks ! He is 21 has not grown in 4 years, he is 150lbs. He used to be 175 before getting sick. What do you think about remaining symptoms! I want my son back!
  22. Posting in case this hasn't been shared before: The Ruggiero-Klinghardt (RK) Protocol for the Diagnosis and Treatment of Chronic Conditions with Particular Focus on Lyme Disease Full online publication here.
  23. Key Takeaways: What can we do to step up our EMF mitigation efforts? What works better for parasites; natural options or pharmaceutical ones? How can we detoxify aluminum and glyphosate? What role do viruses play in chronic illness? What is Dr. Klinghardt's approach to treating Lyme? What are SIBO and MCAS and how to approach treatment? What probiotic may help with SIBO? How do we get more energy and a better functioning brain? Is copper toxicity a common concern? What diet is best for people with Lyme? Is alkaline water a useful tool? What type of bee venom is best?
  24. My son has been sick for 15 months bedridden with all the usual symptoms of mold/Lyme. He was treated for mold and most of his symptoms went away with the exception of headaches, fatigue, neurological symptoms like not wanting anyone to see him and isolating himself in his room. I discovered purple streaks on left side of body. He has had low testosterone and cortisol , not sure if it was from mold or Lyme. Went to infectious disease Dr. sand he said purple streaks are STRETCH marks ! He is 21 has not grown in 4 years, he is 150lbs. He used to be 175 before getting sick. What do you think about remaining symptoms! I want my son back!
  25. Hello, all. I joined the forum today and skimmed messages for our issue. I have a 17 yo daughter who is positive for lyme, bartonella, and babeisia. She is in treatment for those as of April and also has an eating disorder that she began treatment for in September of 2016. I am desperate to connect with anyone who has had the two illnesses as her ed psychiatrist does not believe that she has the tick infections and she is herxing bad (increased eating disorder and other symptoms.) Decreasing the antibx will not stop the restriction cycly. Her llmd does not fully understand the eating disorder and we are headed for a major hospitalization when she becomes medically unstable. Thanks. Amy
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